Talking Point: Mum had what was called a “good death”. Choice would have given her a better one

On behalf of many Tasmanians who have lost loved ones to an excruciating death, we urge all members of the Lower House to listen to their electorates, says Jane Burnett as a milestone is hit.

WE all deserve the right to choose how we die without unnecessary pain or fear, but have we finally won our battle to achieve this?

Tasmania may soon make history and become the third state in Australia to legalise voluntary assisted dying.

Laws have already passed in Victoria and Western Australia, with the Queensland Labor government also indicating it will allow a vote on voluntary assisted dying laws.

Parliament’s Upper House has today passed a fiercely debated Bill which will give people the legal right to access end-of-life choices if they are found to be eligible, with the Lower House to now turn its mind to this important piece of legislation.

Dying, death and bereavement are important parts of everyone’s lives. They happen to us all, and many of us will be touched by the death of someone close to us.

But whilst dying is inevitable, and universal, that is the only certain thing about it.

So much else is unpredictable. It is therefore vital to offer people choice and control over the things that are important to them at this point of maximum vulnerability in their lives. Choices at the end of life affect us all.

We have heard on countless occasions throughout this whole journey to achieve choice, that ultimately people want their end of life to reflect their own individual views and preferences, this is after all about those unique things that make us, us.

Jane Burnett, Alison Eaton and Laura Eaton. Source: Supplied.

However we have heard far too many stories of people’s choices relating to end of life wishes not being heard, shared or indeed met – because the ultimate choice is not an option for them.

In my own experience with Mum’s death, it was a death that was called by some medical professionals a “good death”, in that it was pain-free while the disease ravaged at the end. But a choice would have given her a better one.

The concept that palliative care is in inherent conflict with assisted dying doesn’t make logical sense. The two can coexist, with voluntary assisted dying being an option – just an option – for a person to end their life when their suffering becomes truly unbearable.

Situations like the ones we have heard throughout the course of this debate, are truly unacceptable. We need to deliver good experiences and outcomes for all people at the end of their lives, not ones of intolerable pain, excruciating agony, discomfort, humiliation, and fear – how is this an acceptable means to an end?

The fundamental terms of the debate, as has been campaigned so strongly for, is that people should have a choice, not only about how they live and, by extension, how they die. Dignity, in the context of death, is identified not just as a pain-free death but a chosen time of death.

An undignified death is death which lacks autonomy. It is undoubtedly true that for a lot of people, a feeling of being in control of their lives is very important. It matters more to some than others, but it is a legitimate part of our human rights.

The End of Life Choice Bill will legalise assisted dying in cases where a person over the age of 18 must have a prognosis of an expected death within six months or 12 months for a neurodegenerative condition and is in an advanced state of irreversible decline in capability, and is experiencing unbearable suffering. The Bill carefully defines those eligible for assisted dying, while detailing a very comprehensive set of provisions to ensure this is a free choice, made without coercion, and outlines a stringent series of steps to ensure the person is mentally capable of understanding the nature and consequences of each of the end of life care options.

On behalf of the many Tasmanians who have lost loved ones to an excruciating death, we respectfully urge all members of the Lower House, to listen to their electorates who have so loudly spoken, and to take the time to really listen to the heartbreaking stories others have so bravely shared. You all have a choice in voting on this Bill, so why not give others that same level of autonomy when it comes to the choice between two different deaths.

To see the pure and honest fear in someone’s eyes when they tell you they have been diagnosed with a disease that is so turbulent and devastating is not a moment I wish for anyone.

When a long, slow and painful death is inevitable, we should have the right to be able to end our lives on our own terms, surrounded by our loved ones, content and safe within our minds that we will fade into whatever is next, without a soul destroying battle against a body that has failed us.

We live in a free society, where generally people have the right to choose to do whatever they want. In order to remove that freedom, the government needs a good reason. Many opponents of assisted dying have offered several arguments to back up their case, but none of them seem to be logical or evidence based. All that remains is their belief in the sanctity of life, or indeed a, to be frank an arrogant belief that experiencing a natural death is good death, for the patient and their family. These are spiritual beliefs held by a small cohort of people, and are not adequate reasons to rob people like Diane Gray, of the right to choose how they die.

As we move forward now, it is hard to imagine that other state and territory governments will be able to resist the forces calling for change on this issue. Persistent and strong public support for legalisation coupled with a better understanding of how such regimes could work means that change – if not now then at some point in the foreseeable future – is inevitable.

On behalf of the many people who are suffering and have come before us without having a choice, I appeal to our legislators to make the tough choices, put the right protections in place to make sure that rights to die are not abused, but most of all and importantly, put the ownership of death into the hands of the dying.

We all acknowledge that this is a complicated issue, and one in which I truly believe is worthy of all our efforts. It is a mark of a civilised society that we treat everyone with respect and dignity, and a law change supporting giving people back control at the end of life will, I believe, make us a more civilised, more compassionate society.

As a last plea, I make these final words, have you ever heard the moans of a loved one, the ever so desperate cries, wishing you knew what they were trying to tell you? Have you seen their eyes the last time they flung open, terrified of what’s to come, of what death will be, but terrified to hold on, because of the pain. The dreadful, unimaginable pain of slowly dying.

I want Tasmania to make history, and introduce compassionate laws that will prevent good people from dying cruel deaths.

I want to see an end to the needless and horrific suffering and trauma that is currently taking place in the absence of these laws.

I want to see Tasmanians given more options at the end of life.

Jane Burnett lives in Lindisfarne.